OVERVIEW OF FETAL ALCOHOL SPECTRUM DISORDERS ALCOHOL EXPOSED

OVERVIEW OF FETAL ALCOHOL SPECTRUM DISORDERS & ALCOHOL EXPOSED PREGNANCY Practice & Implementation Center – South at Baylor College of Medicine

Learning Objectives 1. 2. 3. Describe the effects of alcohol exposure during pregnancy Identify the signs and symptoms of fetal alcohol spectrum disorders (FASDs) Discuss the stigma and ethical dilemmas associated with alcohol exposed pregnancy (AEP) and FASDs

Alcohol Use and Health § 3 out of 10 Americans drink at levels that elevate health risks (NIAAA, 2016) § 29 K alcohol induced deaths annually in the US (CDC, 2013), excluding homicides and accidents § FAS/FASDs are the number one preventable cause of birth defects and intellectual disabilities (NIAAA, 2016) § 45% of all pregnancies are unplanned (Finer and Zolna, 2016) § Women who drink alcohol may not realize they are pregnant until significant exposure has occurred Women ages 15 -44 Pregnant Women Current drinkers 54% 11% Binge drinkers 24% 5% Heavy drinkers 6% 1% (SAMHSA NSDUH, 2014)

A Mother’s Story Department of Health and Human Services, Substance Abuse and Mental Health Services Administration. Recovering Hope: Mothers speak out about Fetal Alcohol Spectrum Disorders. At http: //www. ncadi. samhsa. gov.

When was the last time you… Considered in-utero alcohol exposure in a patient: With learning or behavioral difficulties (e. g. , ADHD)? In legal trouble or with a history of incarceration? Who has difficulty holding a job or living independently as an adult? Who is friendly and social during visits and yet seems unable to consistently follow agreed upon, simple treatment plans?

Criteria for Diagnosing FAS With or WITHOUT confirmed fetal exposure to alcohol, diagnosis requires documentation of: 1) All THREE dysmorphic facial features: smooth philtrum, thin vermillion border small palpebral fissures 2) Pre- or post-natal growth deficit 3) At least ONE central nervous system (CNS) abnormality: functional neurological structural Bertrand J, Floyd RL, Weber MK. Morbidity and Mortality Weekly Review. October 28, 2005/54; 1 -10

#1 Facial Abnormalities of FAS 1. Smooth philtrum 2. Thin vermillion border 3. Small palpebral fissures Photo courtesy of Teresa Kellerman

Lip-Philtrum Guide Developed by University of Washington FAS Diagnostic & Prevention Network Guide 1 – Caucasians Guide 2 – African Americans Back side provides face & height-weight tables from the FASD Diagnostic Guide (2004) Order from http: //depts. washington. edu/fas dpn/htmls/order-forms. htm http: //fasdcenter. samhsa. gov/education. Training/courses/Cap. Curriculum/competency 2/facial 2. cfm

Measuring the Palpebral Fissures Astley, et al. Magnetic Resonance Imaging Outcomes From a Comprehensive Magnetic Resonance Study of Children With Fetal Alcohol Spectrum Disorders. Alcoholism: Clinical and Experimental Research, Oct 2009.

Astley, et al. Magnetic Resonance Imaging Outcomes From a Comprehensive Magnetic Resonance Study of Children With Fetal Alcohol Spectrum Disorders. Alcoholism: Clinical and Experimental Research, Oct 2009.

#2 Growth Deficits in FAS Timing Prenatal or Postnatal At any ONE point Degree 10 th percentile adjusted for age, sex, race or ethnicity, and for gestational age ≤ Height or Weight (or Head Circumference)

#3 CNS Abnormalities of FAS Structural Abnormality Head Circumference ≤ 10 th percentile Clinically meaningful brain abnormalities observed through imaging (reduction in size or change in shape of corpus callosum, cerebellum, or basal ganglia) Bertrand J, Floyd RL, Weber MK. MMWR. October 28, 2005/54; 1 -10. photo: Clarren, 1986.

Corpus Callosum Structural Abnormality A: 14 year old control subject: Normal corpus callosum B: 12 year old with FAS: Thin corpus callosum C: 14 year old with FAS: Agenesis of the corpus callosum Mattson, S. N. ; Jernigan, T. L. ; and Riley, E. P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1): 49 -52. (used with permission)

#3 CNS Abnormalities of FAS Neurologic Abnormality Motor problems or seizure NOT from a postnatal insult or fever Other neurologic signs outside normal limits Functional Abnormality Global cognitive or intellectual deficits Substantial developmental delay in younger children Functional deficits in at least 3 domains: Cognitive/developmental deficits Executive functioning Motor functioning Attention problems/hyperactivity Social skills Other -sensory, memory, language Bertrand J, Floyd RL, Weber MK. MMWR. October 28, 2005/54; 1 -10

What are FASDs? “Fetal Alcohol Spectrum Disorders” is NOT a diagnostic category, but rather an umbrella term describing a range of effects that can occur in a person who was exposed to alcohol prenatally. Bertrand J, Floyd RL, Weber MK. MMWR. October 28, 2005 / 54; 1 -10.

6 -9 weeks = FAS facial features Organ damage in first 12 weeks Brain effects throughout

Major Effects of Alcohol by Trimester Courtesy UCLA RTC.

Learning Disorders Verbal Learning: FASDs affect people’s ability to initially encode in memory, but once encoded, recall is not affected By comparison, in Down syndrome, both encoding and recall are impaired. Visual-Spatial Learning: difficulty with learning spatial relationships between objects and with mathematics.

Attention Deficit People with attention deficit hyperactivity disorder tend to have difficulty focusing and maintaining attention. People with FASDs have fewer problems with focusing and maintaining attention, but more trouble shifting attention from one task to another (what researchers call “set shifting”)

Reaction Time Deficits § Slow reaction time § Reduced brain processing speed § Both of these affect overall intelligence by limiting the brain’s capacity to take in information rapidly, particularly in a setting like an ordinary classroom.

Executive Function One of the most limiting features: § The ability to plan for the future; and to change behavior in response to the effects of previous actions is greatly impaired § Cannot put together a sequence of actions in order to achieve a goal - for example, taking the steps necessary to complete homework or to pay a bill on time § Get “stuck” on certain things and cannot keep the whole process in mind while carrying out the steps needed to complete the task § People with FASDs are often incapable of learning from experience and thus may frequently repeat behaviors despite negative results

Poor Impulse Control Often impulsive and may react without thinking. Often diagnosed with conduct disorder and/or oppositional defiant disorder and may have frequent run-ins with law enforcement as they appear to be willfully disobeying authorities and actively seeking repeat punishment. FASDs also appear to make people more likely to lie.

Altered Socialization Difficulties recognizing social cues. Often “can’t take a hint, ” or recognize non-verbal suggestions Intrusiveness: excessive body contact May be overly demanding of attention and may lack empathy towards others Lack of stranger anxiety/too trusting Eager-to-please and easily led and thus may be preyed upon and pushed to commit crimes Tendency towards sexual promiscuity

Beyond Early Childhood Difficulties with: Maintaining friendships and intimate relationships Time management (little to no concept of time) Depression, anxiety and substance use Inappropriate sexuality Achieving in and/or completing school Maintaining employment Living independently: High institutionalization rate in adulthood Criminal justice system institutionalization common

Actual Age: 18 Expressive Language ----------------- 20 Comprehension ------- 6 Money, time concepts ------8 Emotional maturity ---- 6 Physical maturity ----------------- 18 Reading Ability --------------- 16 Social Skills -------- 7 Living Skills ---------Vineland Adaptive Behavior Scales --- 11

Secondary Disabilities Mental health problems – 90% Alcohol and other drug problems - 35% Disrupted school experiences - 61% Juvenile justice - 60% Confinement - 50% Repeated inappropriate sexual behaviors - 49% Streissguth, A. P. , et. al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Developmental and Behavioral Pediatrics. 2004; 5(4): 228 -238.

Co-occurring conditions in FASD Attention-deficit/hyperactivity disorder (ADHD) Oppositional defiant disorder (ODD) Conduct disorder (CD) Reactive attachment disorder (RAD) Sleep disorders Schizophrenia Depression Bipolar disorder Substance use disorders Post-traumatic stress disorder (PTSD) See, e. g. , Popova, S. , et. al. (2016). Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis. Lancet. doi: 10. 1016/s 0140 -6736(15)01345 -8.

Protective Factors § § § § Living in a stable and nurturing home Being diagnosed with FAS before age six years Having a diagnosis of FAS rather than another FASD Never having experienced violence Remaining in each living situation for at least 2. 8 years Experiencing a “good quality home” from age 8 to 12 years of age Having been found eligible for developmental disability (DD) services Having basic needs met for at least 13% of life Streissguth, A. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore: Brookes Publishing. ISBN 1 -55766 -283 -5; see also Streissguth, A. P. , et. al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Developmental and Behavioral Pediatrics. 2004; 5(4): 228 -238.

Morgan https: //www. youtube. com/watch? v=K 0 Vrk LQfk. Fg

Multidisciplinary Approach Critical Medical § Mental Health § § Pharmacotherapy § Behavioral Therapies and Interventions Skilled Nursing Services § Physical, Occupational, Speech Therapy § Educational Interventions § § Early Intervention Services § Exceptional Ed § Teacher In-Service Training § Caregiver Support § Special consideration for Birth Mothers § Parent Training Green JH. Fetal Alcohol Spectrum Disorders: Understanding the Effects off Prenatal Alcohol Exposure and Supporting Students. Journal of School Health. March 2007; 77: 103 -108.

FASD Prevention Tool Kits Developed by ACOG and CDC § www. acog. org/alcohol § Brief guide Laminated screening instrument § Resource information § Patient handouts § Pocket Card § i. Phone App § § § AAP Toolkit: www. aap. org/fasd § Product of AAP Division of Children with Special Needs’ Program to Enhance the Health and Development of Infants and Children (PEHDIC) award from the CDC http: //www. medicalhomeinfo. org/national/pehdic/ accessed June 2011.

Paths to AEP Prevention Primary prevention Women of childbearing age: assess pregnancy risk AND discuss effective contraception when appropriate CHOICES intervention in integrated care settings SBI in ALL adult patients Secondary prevention SBI in ALL pregnant women Counsel no known safe limit, safe time, or type Tertiary prevention Screen women with children for prior AEPs and provide early identification, management, and referral as needed

CHOICES: An Integrated “Best Practice” Intervention Combines Alcohol SBI and discussion of family planning Medical provider (medical assistant, nurse, PA, NP, DO/MD) screens and refers to masters-level counselor: Women ages 14 to 44, drinking at risky levels AND not using effective contraception CHOICES trained counselor provides 2 session motivational interviewing based counseling intervention Woman chooses behavior change focus: decreasing alcohol use and/or using effective contraception (many choose BOTH) Counselor refers patient back to their clinician (PA, NP, DO/MD) to provide any desired family planning services

Keys to AEP prevention Effective contraception, including abstinence PRE conception care Non judgmental: reduce STIGMA Women with prior AEP at greatest risk for current/future AEP “Keep It Simple”: FASDs are 100% preventable There is no known safe amount of alcohol during pregnancy There is no safe time during pregnancy to drink There is no safe type of alcohol during pregnancy

Alcohol Use During Pregnancy • Consider that women who drink during pregnancy are likely to have experienced or be experiencing trauma: • Marker of childhood trauma – 60% have experienced childhood sexual abuse – 55% have experienced childhood physical abuse – 42% have experienced both • Marker of current trauma (Datner, 2007) (Medrano, 1999) (Martin, 1998)

Incorporating AEP Prevention into Preconception Care Think TERATOGEN screen Equivalent to assessing med list for ACE-I, Retinols, other potential teratogens or occupational exposures Two ways to address risk, if patient is using a known teratogen Eliminate or reduce use of teratogen Use effective contraception

Discussing AEP Prevention: Empowering Women to Make Healthier Choices Elicit • • What do you know already about alcohol use and your health? What birth control methods would you like more information about? • You already know quite a bit about how alcohol effects health. What we also know about alcohol use is… To avoid an AEP, you could choose to use effective birth control methods, stop drinking or both. Other women I’ve talked with who share your concerns about that method have found… Provide • • Elicit • • • What do you think about that? What do you see fitting best with your life right now? What else would you like to know about that? Summarize Today we’ve talked about pregnancy prevention and alcohol use. You learned about ____. ü Let’s talk about the plan you’ve made. ü What questions do you have? ü

AEP Prevention Resource Evidence-based prevention practices such as CHOICES and CHOICES-like interventions and opportunities for dissemination Resources to help practitioners in diverse settings, ranging from highrisk settings such as mental health and substance abuse treatment centers to primary care clinics and universities, deliver interventions targeting behavior change. Velasquez, M. M. , Ingersoll, K. , Sobell, M. , & Sobell, L. C. (2015). Women and Drinking: Preventing Alcohol-Exposed Pregnancies. APA Advances in Psychotherapy – Evidence-based Practices. Boston, MA: Hogrefe Press.

What is Alcohol SBI? §Screen all adult patients for risky use of alcohol § Provide Brief Intervention to patients at-risk of developing an alcohol use disorder (risky drinkers) 39

“Traditional” Alcohol Screening One question to some patients, particularly if they “look” like they may have an alcohol problem: Do you drink? You don’t drink do you? § § or Non validated Typical responses: socially, occasionally, no CAGE

SBI Alcohol Screening: 3 Steps 1. Set the stage: o 2. Address Stigma Use evidence-based screen: Pregnant adults: T-ACE 3. Provide feedback: Non drinker: Reinforce healthy choices Drinker: Express concern, seek patient’s perspective and their permission to discuss more

Setting the Stage for Screening: Scripts Can Help ADDRESS STIGMA “Pregnant patients often have questions or concerns about drinking alcohol during pregnancy or before realizing they were pregnant. How about you? ” “It’s important for me in caring for you and your pregnancy that I know about your alcohol use. Tell me about your alcohol use if any since becoming pregnant, perhaps before even realizing you were pregnant? ”

Valid Screen in Pregnancy: T-ACE Tolerance: “How many drinks does it take to make you feel high? ” more Annoyed: “Have people annoyed you by criticizing your drinking? ” yes = 1 point Cut back: “Have you felt you ought to cut back on your drinking? ” yes than 2 = 2 points (0 -2 = 0 points) = 1 point Eye-opener: “Have you ever had a first drink in the morning to steady your nerves or get rid of a hangover? ” yes = 1 point Total Score (0 -5): >0 = at risk

Feedback: Brief and Relevant Reinforce healthy choices and leave “door open” “You are making a healthy decision to not drink alcohol during your pregnancy. Let me know if you ever have any questions about alcohol and pregnancy or are concerned about the alcohol use of a loved one. ” Express concern about alcohol use in pregnancy and seek patient perspective “I’m concerned because alcohol use during pregnancy is unsafe. What are your thoughts about that? ” Ask permission to continue discussion (transition to BI) “Is it alright if we talk a little more about this? ” 44

Brief Intervention Decisional Balance “What do you like about drinking___? ” “What do you not like about drinking___? ” Summarize patient pros and cons, ending with cons Readiness Ruler “So where does that leave you? On a scale of 0 to 10 with 0 being not at all ready and 10 being ready to make a change today, how read are you to cut back/stop drinking? ” Score Readiness Stage of Change 0 -3 Not Ready Pre-contemplation; Early contemplation 4 -7 Unsure Contemplation 8 -10 Ready Preparation; Action 45

Readiness to Change & Intervention 1 2 3 Elicit perceived negative consequences, Express concern, Offer information, Support & follow -up 4 5 6 7 Explore motivation: why a 6 and not a 4, what would have to happen to be a 9, Ask about next steps, Offer support & Follow up 8 9 10 Help patient develop action plan, Identify resources, Instill hope 46

Referrals & Resources CDC FAS Home Page www. cdc. gov/fasd National Organization on Fetal Alcohol Syndrome (NOFAS) www. nofas. org The National Clearinghouse for Alcohol and Drug Information www. health. org Al-Anon, Alateen www. al-anon. alateen. org The National Association for Children of Alcoholics (NACo. A) www. nacoa. org National Institute on Alcohol Abuse and Alcoholism (NIAAA) www. niaaa. nih. gov Substance Abuse and Mental Health Services Administration (SAMHSA) www. samhsa. gov 47

Referrals & Resources Early Childhood Intervention (ECI) www. dars. state. tx. us/ecis FASD- Texas Neuro. Rehab Center (800)-252 -5151 http: //texasneurorehab. com/behavioral-treatment-for-children-andadolescents/residential-neurobehavioral-treatment-for-children-andadolescents/specialty-diagnoses/fetal-alcohol-spectrum-disorders/ Houston Area Partnership for FASD (HAPFASD) www. facebook. com/HAPFASD Texas Office of Prevention of Developmental Disabilities www. topdd. state. tx. us The Arc of Texas www. thearcoftexas. org TCH The Myers Center for Developmental Pediatrics Alcoholics Anonymous (AA & NA) Houston www. aahouston. org, (713) 6866300 48

There’s an App for that − SBIRT App available now for Apple and Android devices Search ‘SBIRT’ 49

Questions?

Acknowledgements BCM FASD PRACTICE AND IMPLEMENTATION CENTER - SOUTH Roger Zoorob, MD Sandra J Gonzalez, MSW Alicia Kowalchuk, DO Mohamad Sidani, MD Luis O Rustveld, Ph. D Susan Gardner Nash, Ph. D, MA Kiara K Spooner, DPH John Grubb II, JD CDC-RFA-DD 14 -1402 INSIGHT SBIRT RESIDENCY TRAINING PROGRAM James Bray, Ph. D § Vicki Waters, MS, PA-C § Alicia Kowalchuk, DO § Substance Abuse and Mental Health Services Administration Grant Number UT 79 T 1020247